Friday, May 18, 2012

It's been a busy two weeks since we were told that Collin has four to five new tumors in his brain and he was restarted on the maintenance drug therapy. He is tolerating the medications very well, with no nausea or other side effects. He is a typical three-year-old...full of energy, always on the go, testing limits, and asking questions. You know that question that all pre-schoolers ask: "Why?" Collin has started asking it, often. Recently one evening, I called him over to take his medicine, and he said to me, "Why I take medicine?" I was totally taken aback. I said, "To make you healthy so you can live a long, happy life." He took the medicine, and as he walked away to go back to playing, he said "I feel good!" This week, he also asked me, "Why I go to speech therapy?" I said, "Well, you know how you get frustrated when we can't understand what you're trying to tell us? You go to speech therapy to help you learn to speak more clearly, so we can understand you better." Collin has enjoyed returning to his therapies, and this morning when he asked me if we were going to therapy and I told him that he didn't have any appointments today, he cried!

All three of his therapists notice improvement since they last saw him in February.  His occupational therapist agrees that his right hand is stronger and that he is using it more; he still needs help with things like motor planning and ADLs.  His physical therapist noticed improvement in his walking, but he still needs to work on things like balance, running, jumping, etc. His speech evaluation showed that he's where he should be for his age as far as what he understands, but because of his difficulty planning and coordinating the movements necessary for speech (apraxia), his ability to speak clearly enough to convey what he wants to say is below the level of a two-year-old. As his speech therapist said, we need to work on his speech more than we do his language. She also does not feel at this point, since it's been two years since his brain surgery, that he will regain any more movement on the right side of his face. I wasn't surprised by any of this, but it was still sad to hear.

Earlier this month, the wonderful Knights of Columbus in Lower Paxton Twp. held a roast beef dinner fundraiser for Collin. Once again, we were humbled by the support of everyone who worked hard to make the event happen, and those who came to show their support and have a delicious dinner! It is very difficult to find the words to express how much we appreciate the support of family, friends, and the community. We are truly grateful!!

This past week Collin was featured in an article in a local paper in conjunction with a Four Diamonds Fund fundraiser we are speaking at this coming Thursday. This will be our first time at the event, called Kuppy's Cruise In. With Neya's help, Collin will have to choose his favorite car or motorcycle. Then we will share Collin's story, talk about the Four Diamonds Fund, and present the winner with a plaque. It will be a fun evening!

The next two weeks leading up to the MRI on June 1 will be just as busy as the last two weeks, but that's probably a good thing. I'm trying hard not to think about the MRI, or my fears...

 

5/10/12 - Neya & Collin

5/12/12 - Neya's First Communion

"Haha cancer, you're not getting me down!"

The label on one of Collin's meds...kind of an oxymoron, don'tcha think?